Hundreds of Canadians die every year awaiting organ donation, and many more suffer before they reach the top of the list. Simon Keith wants to change that – and he knows what it will take to turn Canada’s fragmented organ donation system around
It is late afternoon on a sweltering day, and a group of doctors at the University Medical Center of Southern Nevada has gathered around the body of a teenage boy. His accidental death days earlier cut short a life of potential – but his parents’ decision to donate his organs is giving a second chance at life to others.
In operating room 17, three teams of surgeons get to work. For more than two hours, eight white-gloved hands at a time carefully cut, position and irrigate as others look on. On a table behind them, silver bowls of sterile ice await. A cardiac monitor beeps.
After examining the organs and arteries for abnormalities, the doctors are finally ready to remove the heart. They administer a solution for organ preservation and an anti-coagulant to prevent blood clots. To one side, a team member calls the receiving hospital. “We’ve just heparinized and we’ll cross-clamp within five minutes,” she says.
At 7:29 p.m., doctors place a clamp across the aorta and sterile ice into the body cavity. No longer beating, the heart is quickly removed, cleaned up and packed for transport. There is a sense of urgency; the heart must be transplanted within four hours of removal.
It is rushed down the hall and into a waiting vehicle bound for the airport, where it will then be loaded into a private jet. In all, seven of the boy’s organs will go to five recipients between the ages of 34 and 68, in Nevada, California and Utah.
From the corner of the operating room, Simon Keith has followed the entire operation. He is chief operating officer of the Nevada Donor Network (NDN), the not-for-profit organ procurement organization (OPO) that brought together the doctors in the operating room today. And the procedures he just witnessed have personal significance: Nearly 30 years ago, Keith himself received a life-saving heart transplant. He went on to become the first athlete to play a professional sport after such a procedure, and today, at 50, he’s one of the world’s longest-living heart-transplant recipients.
Keith – who was raised in Victoria, B.C., but had to look elsewhere for his transplant – is now using his unique position to call for improvements to what he describes as a “fragmented” organ-donation system in Canada.
In 1984, Simon Keith was an active, 19-year-old soccer player well on his way to fulfilling his dreams. He had just completed a season playing for second-division Millwall Football Club in England and returned to Canada to join its national team, then based in Victoria. The Olympics and World Cup were on the horizon.
He was playing at the University of Victoria when he first noticed something was wrong. There would be times he would play a great game, but then struggle to climb the stairs from the locker room. His hands would turn ghastly pale and feel colder than they should even in the dreary grey of a Pacific Northwest winter.
“I remember vividly, looking down at my hands, and they were just white as a piece of paper,” Keith recalls in an interview at his Las Vegas home. “But, you know, you just stick them in your pockets and keep going.”
He was diagnosed that year with myocarditis, an inflammation of the heart muscle caused by a viral infection. But despite his weakening condition and a flurry of doctors visits, Keith played on – he now admits he spent the better part of two years in denial.
That came to a halt on March 3, 1986, with a visit to a cardiologist in Vancouver.
“[The doctor] had done some more tests and he just looked me in the eye and said, ‘There’s nothing more we can do. You need a heart transplant, or you’re going to be dead,’ ” Keith said. They gave him six months to live.
“It was that moment like you see in the movies, where you sort of leave your body and everything is in slow motion,” he says. “I couldn’t talk, I couldn’t process it.”
At 21, Keith was introduced to the complicated process of organ transplantation. B.C. was not yet doing heart transplants at that time – the province’s first one wouldn’t be performed until 1988 – so his family turned its search to Ontario.
Meanwhile, Keith endured months of exhaustion and intense nausea. He began taking a high dosage of prednisone, a powerful synthetic drug used to treat inflammation. As it became more difficult for Keith’s heart to pump blood through his system, so, too, did it become difficult for him to take in air. Everyday smells such as food, smoke or perfume made him retch.
But in medical tests, the naturally athletic Keith pushed himself, running as fast and as far as he could on a treadmill, for example, believing he would have better odds of receiving a transplant if he performed well. The prednisone at times made him feel invincible.
Looking back, Keith believes he made a “critical mistake” in appearing relatively well.
“The policy [in] Ontario, and a lot of places at the time, was to help the sickest person first,” Keith wrote in his 2012 autobiography, Heart for the Game. “In other words, whoever was closest to death was first in line. I was being told: ‘You’re not sick enough. Go home, get sicker and then come back.’ ”
Ultimately, Keith’s dual Canadian-British citizenship played a significant role in his treatment. In July, 1986, with a referral from a Victoria-based cardiologist, Keith travelled to Cambridgeshire, England, and checked into Papworth Hospital – a leading heart and lung transplant centre and the site of the first heart transplant in Britain – and received the heart of a 17-year-old boy.
Canada has three specialized patient registries for those with diminished access to transplants because of difficulty in finding a match: the National Organ Waitlist, for non-renal patients who have end-stage organ failure; the Kidney Paired Donation program, which aims to find
matches among otherwise incompatible donor-recipient pairs; and the Highly Sensitized Patient program, which gives provincial transplant programs access to a larger number of potential donors. The three are grouped under the umbrella of the Canadian Transplant Registry, which includes a national real-time wait-list.
Donor registries, however, fall under provincial and territorial jurisdiction, and their policies and protocols can vary, complicating an already complex process.
For example, Alberta, which recently established an organ-and-tissue donation system, requires prospective donors to register online, print out a form and mail or fax it to Alberta Health for processing. Saskatchewan advises those who wish to donate to affix an orange sticker to the back of their health-services cards.
Many organ-donation advocates, such as Keith and the B.C.-based David Foster Foundation, are calling for one national organ registry and allocation system. Instead of having to contact so many different provincial and territorial registries for matching organs, they could speed up the search by using one comprehensive database.
“We would love to see that,” Michael Ravenhill, CEO of the foundation, says. As is, “each province has different regulations, different ways to become an organ donor, and those change. So there are a lot of misconceptions out there, and a lot of misinformation.”
And critics say that because of the regulatory walls, organs donated in one province tend to be transplanted there, too, unless they’re for hard-to-match patients.
However, not everyone thinks a national organ-sharing system would be particularly helpful. Dr. Kathryn Tinckam, a transplant nephrologist, medical advisor at Canadian Blood Services and co-director of the histocompatibility lab at the University Health Network, notes that patients with specialized needs already have a national wait-list.
“If you’re not difficult to match, then you have just as good a chance of finding a donor in your own region,” Tinckam says. “I’m not sure that the programs and services that we’re offering right now require any more of a single national list, because there is great communication now between all the [OPOs] and through the Canadian Transplant Registry.”
BC Transplant and Ontario’s Trillium Gift of Life Network are modelled after world leaders such as those in Spain, and are considered to be the most advanced OPOs in Canada. The two provinces credit their success to improved education of health-care professionals and initiatives such as appointing specially trained critical-care physicians to hospitals to support organ donation.
And unlike other jurisdictions, both provinces offer online organ donor registration that can be completed in two minutes.
Even people on opposing sides of the national database argument agree on one thing: They all need to recruit more donors. If Keith had his way, for example, it would take people mere seconds, on social media or a mobile app, to register on a national database their intent to be an organ donor. He notes Apple and Facebook currently have little-known options for users to share their organ-donor status.
“It’s not legally binding, and that’s what people’s arguments are,” Keith says. “But I’m in the business and I see what happens: When we get a refusal or a decline from a family member of [someone who is not registered as an organ donor], the words we hear are: ‘If only I knew what they wanted to do.’ So what happens if there’s a way for me to show them the [patient’s] iPhone and say, ‘He clicked yes on this.’ Or if I was able to show that, on Twitter, he tweeted #Iamanorgandonor.
“I think that the concept of registering as an organ donor could potentially be obsolete if we could embrace the concept of declaration,” he adds.
According to the Canadian Transplant Society, 90 per cent of Canadians support organ and tissue donation, but less than 25 per cent have made plans to donate.
“It’s something that’s easily put off until later, and if it’s put off until later, you usually don’t do it,” Ed Ferre, provincial operations director at BC Transplant, says. “What [BC Transplant does] is encourage people to register their decisions. The probability of you becoming a donor is lower than actually needing an organ transplant.”
In 2013, the latest year for which data is available, 1,141 living and deceased organ donors resulted in 2,367 solid organ transplant procedures in Canada. A total of 245 Canadians died while waiting for an organ transplant, and 4,433 patients remained on the wait-list at the end of the year.
“The discrepancy between those numbers illustrates the magnitude of the problem,” Tinckam says. “At the end of the day, we need more donors to start to address this problem. All the computer systems don’t solve the problem of having more patients needing organs than organs that are available.”
Canada had 15.7 deceased donors per one million inhabitants in 2013. By comparison, the United States and France both had 26 deceased donors per million in 2014. However, it is worth noting that Canadian measures account for donors whose organs were recovered and transplanted, while U.S. measures also include donors whose organs were recovered, but not transplanted.
Keith’s recovery, while impressive, was not without its challenges. Just three weeks after being discharged from hospital, driven by the natural stubbornness of a burgeoning professional athlete, the 21-year-old snuck out of the house where he was recovering and headed to a nearby soccer pitch. He figured he felt good enough to go for a run.
The first 10 metres felt “freeing” and “awesome,” Keith recalled in his book. But at 30 metres, his legs started burning. At 60, “everything was on fire.” At 100, he hunched over, forced to stop.
“I was discouraged, mad, sad, hopeless,” he wrote.
But the episode was indicative of his drive. Just one year later, Keith returned to competitive soccer, moving to Las Vegas to join his older brother on the University of Nevada, Las Vegas (UNLV) Rebels roster.
Two years after that, he was drafted No. 1 by the Cleveland Crunch of the Major Indoor Soccer League. Through his 20s, he would play professionally for the Victoria Vistas, Winnipeg Fury and Montreal Supra of the Canadian Soccer League.
When he retired from soccer in 1992, Keith became an entrepreneur, building and selling a string of businesses in Las Vegas that included sports-, casino- and financial-management. In 2011, he served on the governing board of the Nevada Donor Network, with the intention of learning more about the organ-donation process to inform his occasional speaking engagements.
At that time, NDN was the only organ procurement organization in the U.S. to be deemed a member not in good standing by the United Network for Organ Sharing, a non-profit organization that co-ordinates U.S. organ transplant activities.
In 2012, Keith stepped in to become the organization’s chief operating officer. He instigated sweeping changes that included public education campaigns, diversifying company revenue and networking with politicians, business groups and high-performing OPOs. Keith says NDN was able to identify a tax-incentive program that drove more capital into the organization than in previous years.
Furthermore, with a goal of “every donor, every organ, every time,” NDN transformed its ranking as one of the country’s worst organ procurement organizations to one of its best.
Now, he’s turning his sights north. By telling his story and meeting with officials, he says, his hope is to increase the profile of organ donation in Canada and, with enough pressure, help change the way the system is run.
In the summer of 2011, Keith stood quietly at a cemetery in Wales, trying to find the right words for the many thoughts in his head, but finding them all inadequate. Persuaded by a friend, Keith had reached out to the family of the boy whose death had sustained his life.
With two of his own children, he now stood before the teenager’s grave with the boy’s 71-year-old father, Roger, feeling overwhelmed with gratitude and solemnity – and taken aback by the jarring similarities between the donor and his own son.
The donor’s name was John Edward; his son’s is Sean Edward. They both had red hair, freckles and blue eyes. They both played soccer; in fact, John Edward had died suddenly on the soccer pitch when an aneurysm ruptured in his head. The field where he died was bordered by a road called Vancouver Drive.
“We all went around and shook hands,” Sean says. “Roger shook my hand and just held on to it, and looked at me.”
“When I stood with Roger at the gravesite,” Keith says, “it became very real for me. It’s indescribable. There are no words to describe how you feel, standing there with the guy’s dad, whose son’s heart you have in your chest. It was very powerful.”